All-

Just a brief update. I got the results of the lab tests and SPECT scan (unremarkable), and have ramped up significantly on the Sinemet dosage to the point of taking about 8 25/100 tablets a day, with extra carbidopa in the mornings. Bottom line is that I'm seeing some symptom improvement from the Sinemet, and am finding ways to manage the side-effects, which are mostly still nausea, dizziness, insomnia, daytime sleepiness, and "fogginess". So now I'm starting to move from disbelief and skepticism to acceptance and management.

I was initially a bit confused about the meaning of the "unremarkable" SPECT scan. Apparently, there are two kinds of SPECT scans that have some relevance to Parkinson's, and only one of them is used for diagnosis in the US. The one I had done measures blood perfusion in the brain, and was done to rule out physical defects that could have been causing my highly asymmetric symptoms. The other, which is used for diagnosis in the UK and elsewhere but only for research in the US, measures dopamine activity in the brain. "Unremarkable" in this context just means that there are no blood flow weirdnesses going on.

I wanted to again thank all of you who responded for your help. I have more answers now, and am starting down the path of figuring out what this new life is going to be -

I also had a frank discussion with my neurologist about his lack of response to phone calls. There were some extenuating circumstances, but one thing he mentioned is that he has a "take-it-or-leave-it" policy of not discussing test results over the phone. Doesn't really excuse his lack of flexibility in scheduling a short appointment to have a face-to-face meeting, but to his credit he didn't make excuses or try to hide from responsibility.

I think more of us than not have had a rocky road to diagnosis. It took me three neuros and a hand surgeon to get one. As far as sinemet, eventhough they insist upon calling it the "gold standard" it really doesn't work well for me either.

I have been diagnosed 9 years, was the poster child for Permax until they withdrew it. Went on sinemet because I didn't tolerate requip of mirapex. I developed dystonia in the backs of my legs and feet that the sinemet didn't touch. Went on Neupro until the withdrew it (a repeating theme.) Then went back to Requip very slowly and it has helped. I'm nearing a top dose of it now and additional sinemet doesn't make up for the waning effects of the requip. Even taking twice as much does not make any difference. So there are some of us that don't really respond well to ldopa and still have PD (probably.) Ah denial, don't ya love it.

Don't really have any advice except maybe try an agonist. Worked for me.
Good luck.